would appreciate people to share their own experiences, coping techniques etc
I have had SLE lupus for 10 years. Tried all the meds from Plaq to Imuran with mostly negative side effects.
Last March I had a flare up while I was on Imuran.
From December to March I had an increasing inabillity of breathing. During this time I would lie on the couch at home all day with severe fatigue and would sleep up to 15 hours a day.
Finally, in the 3rd week of March it got so bad that Itried to walk to the top of our stairs to pack a bag for hospital that when I got to the top, I ended up laying there on the ground for 25 minutes recovering.
I was also having flash fevers... very bad ones of 41-42oc.
I WAS GASPING FOR AIR... I wwas so scared and felt terrible for my 4yo DD.
The frustrating part was during this time of feeling ill, my husband had accused me of 'Neglecting everything' and the night I rang him to come home from work early to take me to the hospital, continued to work for another 2 hours (at his own choice, he can leave when he wants to).
Anyway, makes you wonder who really cares??????
When I finally got to the hospital, I couldn't even speak 2 words without gasping for air. When they cheacked my Oxygen, I was only 87%... Anything below 95% requires immediate emergency care.
I was sent for an immediate MRI and what the results showed where horrible... all the fibres in my lungs were completely swollen.
The confusing part of it was that my blood tests for infection and my disease tests were both comming back negative.
I ended up getting an Endoscopy (one of the worst & most horrible experiences of my life!!!) and stayed in hospital fo 6 weeks received iv antibiotics even though infection test was negative and large daily doses of steroids (yay!)
The lung specialists and immunologists didnt know what to do with me as they could not diagnose.
Eventually, all they could suggest was that it may be lupus phnumenitis as a result of taking IMURAN.
Now, there are only a few ever recorded cases of this ever happening... but, I am one of those people that is usually a statistic/1 in a million cases)
They sent me home without an official diagnosis, left me on the imuran, increased steroids and I was back there with a fever and not breathing again 2 weeks later (oh well, at least I got to spend Easter at home!)
As I was officially under the care of the lung dept, and they had decided to leave me on the Imuran (even though that was probably the cause, get that?) I had to get my immunologist in there asap for an assesment.. He wanted to get me off the Imuran and try Mycophenolate.
I couldnt beleive the lung dept was trying to disagree!? My immunologist pushed his recomendations through and after I stopped taking the Imuran, my breathing eventually recovered and the fevers faded.
I have been on the Cellcept and prednisone for nearly a year now... I can breathe, but, I still feel like 'bleep'.
How can I be on all this medication and still be feeling like I should be in a hospital somewhere dying?
I am soo tired and grumpy. I just want to lie down all the time. This is not how I am.
We have had a family death and another is dying theres so much drama at my house I feel like I'm going to have a mental break down.. seriously.
My blood tests are fine, lupus not over active (but, of course they never are even when I'm dying)
Is my health state effecting my mental well being? I tried anti depresants, honestly... not my thing.. Yes, I found one that worked took it but I am still mentally and physically exhausted.
I know the lupus makes me tired and sick all the time, but.. it feels like it could be more. I snap at everything. It doesnt help that my 4yo dosnt listen to anything I ask her to do and is over the top messy...
I dont have much family support, I do get what I'd call crumbs not often. And when ever I start to show slight recovery, all is quickly forgotten by others and the ol' horse has to put the cart back on straight away.
I feel neglected and pushed. Does anyone else often feel this way about those close to them?
Edited by peaches2007, 10 March 2012 - 01:31 PM.